Disability Advocacy Organizations

Advocacy organizations engage in activities that promote the significance of inclusion, by working to create a positive and inclusive environment for individuals with disabilities. These groups engage in campaigns that recommend governments and policy makers invest in programs that protect the civil rights of individuals with disabilities, and encourage the adoption of international and national standards for physical accessibility, employment, education, health care, and programs designed to improve the quality of life.

International Advocacy Disability Organizations

Amnesty International

Well-known for its advocacy on behalf of political prisoners around the world, Amnesty International, or AI, works to protect the civil and human rights of disenfranchised people in more than 150 countries. AI is independent of all governments.

By its own estimates, AI has more than 3 million volunteers that take part in several initiatives, from organizing letter-writing campaigns, to holding vigils and demonstrating against actions that are otherwise unethical or abusive.

The goal of the organization is to ensure everyone has access to all of protections afforded by the Universal Declaration of Human Rights. AI has been successful in rallying public pressure on governments to end injustices based on creed, religion, and political philosophy. Some of the causes that AI advocates for include women’s rights, freedom of expression and corporate accountability.

AI’s disability programs are not widely publicized but play a vital role in the international disabled community. At AI, accessibility is considered a basic human right, and through its network of volunteers and distributed materials, it asks all governments to implement reasonable accessibility provisions.

The organization has also taken a stand against governments that seek to execute people deemed to be developmentally challenged. Most recently, AI urged the state of Georgia to reconsider setting an execution date for a man who’s measured IQ was 70.

AI was founded in London in 1961. To learn more about AI, visit AI.

World Institute on Disability

The mission of the World Institute on Disability, or WID, is to eliminate barriers to full social integration, promote employment, economic security, housing and health care that individuals with disability experience. An international organization, WID was founded in 1983 and is headquartered in Berkeley, Ca.

WID acts out its mission through:

• Advocacy
• Conducting research
• Created programs
• Public education
• Training

WID creates programs that directly impact individuals with disabilities, that create public awareness of disability initiatives, and that promote the importance of public and private aid programs. Advocacy campaigns focus on several issues, including:

• Accessibility and Assistive Technology
• Employment and Employer Supports
• Health Care Access and Long Term Services
• Financial Planning, Asset Building, and Economic Security
• Housing – Independent Living and Community Living

One specific initiative undertaken by WID is the Employment and Disability Benefits Initiative, which was created in 2000 to provide work and medical coverage to young adults with disabilities through community-based employment programs.

WID recognizes that with 20 percent of the population living with some form of disability, these individuals are three times more likely to live in poverty than other groups. WID’s Access to Assets, a poverty prevention program, teaches individuals with disabilities financial management skills. They provide technical assistance to individuals with disabilities that wish to obtain employment and employers with workforce development programs that hire those with a disability.

WID also conducts regular policy analysis to determine whether current laws are a help, or a hindrance, to individuals with special needs. An e-newsletter, called EQUITY, is produced to update educational institutions and individuals on federal policies and educational guidelines, as well as answer questions about disabilities. Also, WID operates a toll-free hotline, 1-866-723-1201, to refer people with disabilities or those who care about them to poverty reduction programs, technical assistance services, and educational supports.

Other programs WID offers include:

• Health access and information services
• Quality of care training services to medical staff focused on addressing disability issues and Americans with Disabilities Act compliance
• Working with educators to ensure teens with disabilities can transition to college
• Wellness strategies
• Eliminating abuse and neglect

International programs include training and technical assistance in developing countries and a justice and quality initiative in the Middle East. Additionally, WID created the Georgian Wheelchair Project, which for five years has ensured sustainable wheelchair production and repair in one of the world’s poorest regions. To date, the project has produced 1,500 wheelchairs, 125 of which were given to children. Other international advocacy projects support the removal of barriers from public facilities and the availability of computer-based technologies in areas where access may be limited.

To learn more about WID’s programs, visit WID.

For information on EQUITY, visit EQUITY.

World Institute on Disability (WID)
510 Sixteenth Street, Suite 100
Oakland, CA 94612-1500
510-763-4100

World Institute on Disability (WID)
3075 Adeline Street, Suite 280
Berkeley, CA 94703
510-225-6400, or 510-225-0478
Toll-free Hotline: 866-723-1201

National Disability Advocacy Organizations

Administration on Intellectual and Developmental Disabilities

The Administration on Intellectual and Developmental Disabilities, or AIDD, is a governmental organization that is dedicated to ensuring that individuals with developmental disabilities have access to all aspects of life in the United States by promoting the importance of inclusion and independent living.

Formerly called the Administration on Developmental Disability, the U.S. Department of Health and Human Services, which oversees the AIDD, in 2012, combined the administration with the Administration on Aging and the Office on Disability. The new agency is the Administration for Community Living. When this change was implemented, the ADD changed its name to the Administration on Intellectual and Developmental Disabilities.

The AIDD’s goals include changing outmoded attitudes about disabilities, and helping individuals with disabilities find programs that will help them achieve their individual goals. A significant part of the AIDD’s responsibilities is to oversee four grant programs that provide support to non-profits and governmental agencies.

The grant programs were put into place by the Developmental Disabilities Assistance and Bill of Rights Act of 2000. The grant programs are called the State Councils on Developmental Disabilities; the State Protection and Advocacy Systems; the University Centers for Excellence in Developmental Disabilities Education, Research and Service.

AIDD-funded projects are closely monitored; feedback from people who administer programs or participate in them helps AIDD officials determine where resources are needed. Public forums help the administration make decisions on what projects should receive funding.

Grantee organizations are engaged in several aspects of disability advocacy; programs include those that provide health care services, preventative health services, educational resources, and assistance to families. All services supported by the AIDD are designed to help individuals with developmental disabilities live independently.

To learn more about the AIDD, visit AIDD.

To find an AIDD office near you, visit Local AIDD office.

To find your State Council on Developmental Disabilities, visit State Council on Developmental Disabilities.

To find your State Protection and Advocacy System, visit State Council on Developmental Disabilities.

To find the National Network of University Centers for Excellence in Developmental Disabilities Education, Research and Service, or UCEDDs, near you, visit UCEDD State Listing.

To find programs within your state of national significance, visit Projects of National Significance.

Administration on Intellectual and Developmental Disabilities
(Administration on Community Living)
370 L’Enfant Promenade, S.w.
Washington, D.C. 20447
202-690-6590

American Association on Intellectual and Developmental Disabilities

The American Association on Intellectual and Developmental Disabilities, or AAIDD, promotes progressive policies and sound research to aid and defend the rights of individuals with intellectual and developmental disabilities living in the United States.

The AAIDD’s 13-point plan is designed to ensure that individuals with disabilities achieve full social inclusion and equality, enjoy expanded choices in how and where they live their lives, and have access to public places. The AAIDD also aims to raise awareness regarding issues that affect individuals with physical or developmental disabilities and advocates for further human service supports in education and employment settings for disabled individuals.

A robust legislative agenda is at the heart of the AAIDD’s activities and programs. The organization has joined other advocacy groups, including United Cerebral Palsy, in helping to shape a strong federal role that provides benefits to children with disabilities and their families. AAIDD’s position is that access to benefits that address issues such as a meaningful and relevant education, access to public places, inclusion in society and the ability to tap into medical treatment is a civil rights issue.

Funding for programs in communities throughout the United States that provide services is a key component in the AAIDD’s agenda. This is important to families that include a child with Cerebral Palsy because federally-supported programs designed to assist individuals with disabilities are often underfunded, especially during challenging economic times.

Mobility between states – which is a common phenomenon among able-bodied individuals who are seeking work or a change in scenery – is another issue that can affect individuals with disabilities. If a person is receiving state aid, he or she may not be able to move out of state because the aid and services they receive are not portable. Complicating matters further is the fact that people may not be able to tap into the same benefits in another state. This means individuals with disabilities may not be able to pursue work or move out of state to join family or friends.

The AAIDD is one of only a handful of advocacy organizations that does offer services at the community level. Chapters are divided up by region and are in most of the 50 states. At a chapter office, clients can take part in an assessment that determines what a person needs, and what services are available through the government and non-profits. Of equal importance is the measurement of what a person’s interests and goals are – AAIDD case workers will help clients develop a path to meet those goals.

AAIDD professionals also offer on-site and online training to those who work with people that have developmental disabilities so that they can better motivate and assist their clients.

To learn more about the AAIDD, visit AAIDD.

American Association on Intellectual and Developmental Disabilities
501 Third St., NW Suite 200
Washington DC, 20001
202-387-1968

American Association of People with Disabilities

The largest disability rights organization in the United States, the American Association of People with Disabilities, or AAPD, is founded on the principle that individuals with disabilities are entitled to equal opportunity, economic stability, a meaningful education, independent living and inclusion in all aspects of society.

The AAPD advocates on Capitol Hill for change at all levels of society. A vital component of the AAPD’s pro-active agenda is access to education; officials at the organization believe education is the cornerstone that enables individuals with disabilities to work and contribute to society, which further enables them to avoid the hardships of economic dependence and poverty.

That commitment extends to higher education; the AAPD’s Higher Education Project partners with colleges and universities to identify resources and create peer networks on behalf of students with disabilities.

Other problems that the AAPD is working to alleviate include bullying, which is an alarming and sadly common problem that young individuals with disabilities face.

Many of the AAPD’s efforts involve employability of individuals with disabilities. Data collected by the organization indicated that as a group, individuals with disabilities have an unemployment rate of 16 percent. There are several factors that are driving the unemployment levels, including physical accessibility, challenges in obtaining a relevant education that can be applied to the modern workplace, and attitudes about disability shared by some employers.

In Washington DC, the AAPD is involved in activities that support employment for individuals with disabilities, and encourage business practices that allow potential employees to share their talents with employers. The organization’s advocacy measures also include encouraging vigorous enforcement of the Americans with Disabilities Act, and supports legislation that strengthens laws that aim to end workplace discrimination. To date, the AAPD mentors 13,000 college students and other job seekers with disabilities with thousands of employers.

Other key goals that the AAPD advocate for include access to high-quality health care, the availability of suitable affordable housing, access to lending, and access to assistive devices and other technologies that can enhance a disabled individual’s mobility and improve how he or she communicates.

Cultivating the quality of and access to health care is also a major AAPD goal. Health care is an issue that affects all individuals with physical and developmental disabilities; the ability to control one’s health is paramount in an individual with disabilities’ quest to lead an independent, vigorous life. In Washington DC, AAPD staff advocates for sound policies regarding preventative care and improved insurance coverage for individuals with disabilities. Additionally, the AAPD is supports full funding for government programs such as Medicare and Medicaid, both of which serve millions of individuals with physical, developmental and intellectual challenges.

Other issues the AAPD advocates for are fair housing and transportation equity. Access to housing that is safe and affordable is a vital issue for individuals with disabilities, who often earn less than their able-bodied counterparts. The AAPD also works for the enforcement of fair housing laws and civil rights laws the end housing discrimination. Additionally, the AAPD also works to end discrimination in all forms of lending. The AAPD’s agenda also calls for more transit options for individuals with disabilities, especially in areas outside major metropolitan areas that are dependent on automobiles for transportation.

For more information about the AAPD, visit AAPD.

American Association on Intellectual and Developmental Disabilities
2013 H St., NW, 5th Floor
Washington DC, 20006
202-457-0046 V/TTY
800-840-8844

National Association of Councils on Developmental Disabilities

The National Association of Councils on Developmental Disabilities, or the NACDD, a U.S. based national organization that serves as the voice for 55 individual state and territorial Councils on Developmental Disabilities. The association helps local councils set agendas and create programs that have overarching goal of improving the lives of individuals with disabilities while encouraging measures that meet the specific needs of people in a particular region.

The NACDD is a 501c3 organization that supports laws that encourage inclusion. By advocating for such provisions in Washington DC and assisting its state affiliates to push for better statewide laws, the NACDD helps secure federal funding for outcome-based services that assist individuals with physical and developmental disabilities.

The organization effects change by educating individual members of Congress about issues that are beneficial, or detrimental, to the ability of disabled individuals to lead full, independent lives. Members of the NACDD represent the interests of individuals with disabilities on coalitions and councils that influence issues such as fair housing and access to transportation, to name but a few.

The NACDD also developed state plans through its council to ensure all state policies and provisions adhered to the Developmental Disabilities Assistance and Bill of Rights Act, which requires states to address education and early intervention, employment, housing, recreation and other factors as they relate to people with disabilities.

Additionally, the NACDD provides technical assistance to its statewide affiliates and provides a platform for those organizations and resources.

To learn more about the NACDD, visit NACDD.

National Association of Councils on Developmental Disabilities
1825 K St. NW, Suite 600
Washington DC, 20006
202-506-5813

National Center on Birth Defects and Developmental Disabilities

The National Center on Birth Defects and Developmental Disabilities, or NCBDDD, was established in 2001, after the establishment and passage of the Children’s Health Care Act of 2000.

The NCBDDD is a division of the Centers of Disease Control and Prevention, or CDC. The focus of the division is on the health of newborns infants, children and adults. Specifically, the NCBDDD’s efforts involve the prevention of birth defects and developmental disabilities; health care initiatives undertaken by the NCBDDD is focused on engaging individuals regarding healthy habits in an effort to educate and inform about birth defects. In particular, programs administered by the NCBDD tend to cater to the needs of young children – from birth until 5 years old – that are vulnerable to health issues caused by birth defects.

Additionally, the division collects data on birth defects, which it makes public. Information collected by the NCBDDD indicates that one birth of 33 in the United States will result in a birth defect; of those, 5,500 annually will die because of complications related to the birth defect.

As part of its efforts, the NCBDDD conducts epidemiological research to determine what the major modifiable risk factors are for birth defects, and how to implement best practices in medical, governmental and other public settings that optimize prevention efforts. Among the NCBDDD’s priorities are finding ways to address blood clotting disorders and obesity. The also strive to improve access to health care for children and adults.

The NCBDDD has put into place a strategic plan to address programs, opportunities and activities to help individuals with birth defects achieve their highest personal potential, including identifying early interventions, forming partnerships, breaking down barriers, and increasing public engagement and understanding about birth defects. The division also develops and evaluates policies that can be implemented by national, state and local agencies.

To learn more about the NCBDD, visit NCBDD.

National Center on Birth Defects and Developmental Disabilities
1600 Clifton Road, MS E-87
Atlanta, GA 30333
888-232-6348 TTY
800-232-4636

National Institute on Disability and Rehabilitation Research

The National Institute on Disability and Rehabilitation Research is the research arm of the U.S. Department of Education’s Office of Special Education and Rehabilitative Services. NIDRR-OSERS supplies applied research, training and development that are used in educational settings throughout the United States.

One of three divisions that comprise OSERS, the NIDRR sponsors research in concert with the Rehabilitation Services Administration and the Office of Special Education Programs.

The goal of all NIDRR programs is to enhance educational opportunities for children with physical or developmental disabilities at school, and increase the likelihood that the skills learned at school can be transferred to independent-living scenarios. To meet that goal, the NIDRR continually assesses new programs and initiatives to determine whether they are effective in empowering individuals with disabilities to perform activities within their communities. Additionally, the NIDRR also engages in programs that help provide accommodations for individuals with disabilities in society, and expand an understanding of disability-related issues such as health, employment, and function among members of the general public.

The NIDRR conducts research into the causes of disability and potential remedies through its Interagency Committee on Disability. The committee co-sponsors federally-funded research at agencies within the United States and abroad.

The NIDRR also provides monies to various universities, social service agencies and non-profits to fund programs that provide direct aid to individuals and their families. Programs that receive funding assist agencies in meeting everyday obligations such as finding therapies and treatment that give individuals with disabilities an improved opportunity to cope with their needs.

To receive funding, agencies must undergo a rigorous peer review prior to the beginning of any program or project.

To learn more about the NIDRR, visit NIDRR.

Mailing Address:
National Institute on Disability and Rehabilitation Research
U.S. Department of Education
400 Maryland Ave., SW, Mailstop 2700
Washington, DC 20202

Physical Address:
National Institute on Disability and Rehabilitation Research
U.S. Department of Education
Potomac Center Building
550 12 St., SW
Washington, DC 20202
202-245-7640 V/TTY

National Organization on Disability

The National Organization on Disability is a private non-profit organization that advocates specifically in favor of employment inclusion. Known as NOD, the organization promotes workplaces access, fairness in the workplace, and the importance of adhering to individuals’ with disabilities civil rights.

Though NOD doesn’t engage in issues that affect young children, by the time a child is a teen, there is the possibility that he or she may wish to seek part-time employment. Because 79 percent of individuals with disabilities are unemployed, according to data collected NOD, they are often locked into a cycle of dependence on the social services system. Government benefits often don’t provide enough money or resources for disabled individuals to live a rewarding life. And, many individuals that have disabilities are qualified, willing and able to participate in the labor force.

To help increase the ranks of individuals with disabilities in the workforce, NOD has partnered with employers, service providers, and the military to create programs that employ individuals with disabilities. The organization also works with schools as well as employers to help high school students transition into the world or work.

A specific initiative that NOD is actively advocating for is the Universal Design for the Workforce Development System. This program assists professionals in creating full-accessible workplaces that make it easier for individuals with disabilities to be productive in the workplace. Universal Design also creates programs that employers seeking talented employees and workers seeking professional development opportunities can take advantage of.

The Universal Design program is a partnership developed by NOD, Rutgers University and the University of Massachusetts-Boston. Funding for the project was provided by the Department of Labor’s Office of Disability Employment Policy.

More information about NOD can be found at the organization’s website, NOD.

National Organization on Disability
77 Water St., Suite 204
New York, NY 10005
646-505-1191, ext. 122

TASH

TASH is a private non-profit organization that has been at the forefront of the fight for human rights for individuals with disabilities for more than 35 years.

The mission that TASH is committed to being is to eliminate social injustices and stigmas and advocate for the rights of individuals with disabilities to participate in a society that practices full inclusion, equity, and opportunity for all people. Every day, TASH is engaged, at the federal level, to help encourage and craft policies and laws that provide adequate supports, access to services and resources, and modifications to traditional systems so they can be used by individuals with physical or developmental challenges.

The organization’s main focus centers on four key issues:

• Inclusive education
• Community living
• Diversity
• Cultural competency and human rights

TASH’s position on education is that to the largest extent possible, students with disabilities should be educated in the general education system as opposed to the special education system. The belief is that a student will get a more relevant education in a mainstream setting; the student’s social experience will also be improved due exposure to a more diverse collection of peers.

Community living and access to clean, affordable housing is also a key component of TASH’s agenda. Adults with disabilities not only experience housing discrimination at an alarming rate, they also experience the same issues at lending institutions when they decide to purchase a dwelling.

Initiatives that TASH supports help individuals with disabilities choose where they live by encouraging programs that provide supports in employment, education and in the workplace. These supports, in turn, allow people to live more independently; they can build and form relationships with neighbors and community members just as able-bodied people do every day.

Another issue that TASH has worked extensively to eliminate is the use of restraints in home, educational, therapeutic and healthcare settings.

Unfortunately, there are some organizations and individuals that believe restraining children protects them from unintentionally hurting themselves and others. TASH believes this is an abuse practice and that behavior issues should be dealt with through positive reinforcement, mental health treatment, and other methods that don’t involve using restraints.

TASH is working with legislatures to close existing loopholes in the law that allow the use of restraints. The organization is also working to educate people in the health care and education communities about appropriate behavioral interventions that don’t involve restraints.

To learn more about TASH, visit TASH.

TASH
1001 Connecticut Ave. NW, Suite 235
Washington DC, 20036
202-540-9019